In 2007, supported by an extraordinary team of family, friends, and medical staff, I stomped the snot out of a nasty cancer that was on its way to killing me. I've since learned that the way I did it has a lot in common with the advice of the "e-patients" movement, so I've changed my blogger name from Patient Dave to e-Patient Dave.

Friday, May 9, 2008

This series teaches what participatory medicine means - a guide to learning to participate actively in your medical care. With the right approach, patients and families are learning that they can be truly valuable contributors to their care, for a host of reasons.

A lot of the series is things I learned in a hurry when I got my Stage IV cancer diagnosis. I pieced these thoughts together in the first few weeks, then adjusted and learned on the fly, with no time to lose. Ironically, a year after my diagnosis (when I was essentially "all better"), I learned that all these principles have a framework I'd never heard of: "e-patient," where e means empowered, engaged, equipped, enabled.

Last month we covered Beginner's Guide, Part 1. If you haven't read that post, please do, because here I'll presume you know what I'm talking about.

Five pillars of participatory medicine

This post covers a new model I've recently thought up -- five pillars of participatory medicine. The model may evolve, but here it is at this moment:

Excellent providers (doctors, nurses, etc, and excellent hospitals)

A strong peer community (other patients dealing with your condition, and/or their families).

A strong support community.

Awareness of new realities and data that have overthrown obsolete principles about who knows what, and what info is reliable

Good, effective research skills

You, the e-patient, are at the center of all this - these are the instruments of your care that you orchestrate. Perhaps more than you can imagine, even though you're not an MD, your role in the orchestration is entirely within your scope of control - and responsibility.

Lord knows the insurance companies aren't going to pay anyone else to do it. And nobody else could possibly be more motivated than you.

This post will cover part 1.

1. Excellent providers

You have every right to ask who's the best physician in the world for your case. I'm not saying you should ditch yours - how would I know?? You might have the best in the world for your case. I'm just saying it's not at all rude to ask around.

Here's the thing: whether you're in crisis or not, you'd better get ready, because your time will come. So get comfortable asking sensible questions of your caregivers, even for non-crisis conditions: "Is this going to hurt?" "Is there any alternative?" "How often does this procedure harm people?"

I had two cases earlier in life where providers didn't like me asking questions. If that happens to you, run. In one case I actually got up and left the office, and I'm glad, because it turned he left the country a year later on tax evasion charges. In the other case the doctor got huffy when I asked if there'd be a scar, then did a much bigger procedure than necessary - and never came to see me after surgery.

My oncologist is one of the best in the world for my cancer, immensely knowledgeable and skilled. He accepts emails (which I keep short), and when I thanked him, he wrote "I am happy to field your questions."